Archives for June 2014

Over the last week or so we had been enjoying a little bit of a heat wave (back to rain today) with some gloriously hot sunny days – and it has been great practice for France.

After the anxious experience we had on the beach a few weeks ago (see previous blog post) I was a little unnerved as to how Lucia would cope in the heat and how we could handle it in the best possible way. But I am pleased to say she has been wonderful!

Tights on or off?

Our main dilemma has obviously been the compression tights – can we take them off for short periods to give her a breather or would that be to the detriment of her swelling? Of course, by removing the tights we are also opening her up to more of a risk of scrapes, cuts or bites as well so it is a big decision to make – especially when you overthink things in the detail that I do!

Advice from Lynne, our physio, was to try them off for short periods of time in the heat and monitor the effects. So we got very brave and decided to try this little experiment as on the first of the really warm days Lucia had a hard time coping.

My parents were looking after her and were doing an amazing job of keeping her as cool as possible with cold face cloths and staying indoors. However, she just wanted her tights off and was in grumpy form. Knowing how warm I had felt in my office all day wearing a cool dress I could only imagine how hot and uncomfortable my poor baby must have felt.

Tights off!

So, the second day (also with my parents) we made the decision to take off her tights about 4pm if she was struggling again. Then we would wait and see. I arrived home from work to find her happily running around the house in shorts and bare legs. And she looked fabulous! Her swelling hadn’t seemed to get any worse and it was so lovely to see her playing away with no garments on. Generally we take off her compression around 6pm to give her some ‘naked leg time’ as we call it and to do her massage therapy – so to give her two hours of running around compression-free must have felt amazing to her! (As soon as we say ‘naked leg time’ Lucia gets so excited and when the tights are off she runs and jumps and dances around like mad!)

The third day I was at home and filled up the paddling pool to allow both Max and Lucia to keep cool in the sun. It was also a bit of a compromise for me as at least I knew that when her tights were off she was still able to have the natural compression that water gives her.

In, out, in, out…

That day Lucia wore her tights for a couple of hours in the morning, then I took them off for an hour in the pool, put them back on for four hours in the afternoon and then took them off for the day about 4pm. I have to say my nerves were on edge when she had them off as I watched for signs of extra swelling or cuts but after a little while I was able to relax and enjoy watching her playing with Max in their swimming costumes – and not a compression garment in sight. It was so ‘normal’ and I loved it and she loved it.

1% flexible

Wonderfully, there has been no ill-effects so I think we now know she can manage short periods without the tights as long as we are vigilant. Crucially, she was still in her garments for the majority of each day so she was still gaining plenty of compression benefits as well as managing a little free time.

Obviously this would never be a daily thing as it is so important that Lucia knows she has to wear her tights regularly, everyday, for the rest of her life. If we started to take them off too much we would risk all the good work we have been doing since she was five months old to maintain her condition as well as teaching her bad habits. However, I am beginning to think that as long as they are on 99% of the time that we can allow that 1% every now and again when needs be.

I feel a little more prepared for France now and a little bit more flexible with everything which is a big step – and now more excited to get on our holidays!

I had a whole other post ready to go but we are having a bit of an emergency that some of you may be able to help with! Lucia fell today – which of course gave me a heart attack – and after I had checked her legs for any cuts (she didn’t have any thankfully) we then noticed the hole she had put in the knee of her compression tights. Her last pair of compression tights.

So of course blind panic set in. We are awaiting her new tights which we hope will be here by the end of the week but there are no guarantees with that. So what I need to know is can we do any sort of minor repairs to the tights to be able to keep wearing them until we get the new ones? Her other pair has a hole in the heel which might be slightly easier to repair so have a couple of options I hope.

We are having a bit of a heat wave too so all I can think is hot weather, more swelling and no compression, so as you can imagine I am a little concerned. Without the tights it is also really difficult to get her shoes on and there is no way we will be able to keep her in for a week or more. We need tights!

I will of course be contacting Lynne our physio first thing in the morning but any advice on sewing/patching or whatever might work is greatly appreciated. Thank you.

So yesterday we had a very impromptu visit to the beach. It was a beautiful day, sunny and 20 degrees and that doesn’t happen too often in our wee country! We got a phone call about 11.30am from friends saying they were heading to the beach so we decided to make the most of the weather and go too.

The beach is an hour’s drive from our home so I didn’t have time to think about it. We got ready, packed up swimming costumes, spare clothes, shoes, a picnic and hit the road. It was only when we arrived that the realization of where we were hit me.

The beach was busy with kids running around, building sandcastles, burying each other, splashing in the sea and having a great time. Max and the other kids in our group all kicked off their shoes and socks, got into swimming gear and started playing. And as soon as Lucia saw all of this she started pulling at her little crocs and tights asking me to take them off so she could play. And my heart felt like it broke a little bit in that moment.

Tears

I tried to explain that she had to keep her tights on to look after her legs and feet and her crocs were especially for the beach. But she wasn’t having it. She cried big fat tears as she asked me again to take off her shoes and tights and started trying to take off the crocs. It took all my strength not to cry with her and just try and explain things again but she was so upset.

We managed to distract her for a little while by building sandcastles and she settled down and enjoyed filling the bucket up with sand. Meanwhile though I just felt sick with anxiety as her crocs filled with sand, worrying that the small grains would go through her tights, get stuck in her nails, scrape her skin, give her little cuts and cause infection. (FYI, not too much and made it into her tights.)

I also felt so sad looking at her playing on the beach on a sunny day with these tights on, not able to enjoy the feeling of the warm sun on her legs, or feel the sand between her toes. I looked at all the other children in their swimsuits and bare legs and feet without a care in the world, running in and out of the sea covered in sand and I felt so sad that Lucia couldn’t enjoy such a simple pleasure.

She has the cutest swimming costume that she wears to the pool but I couldn’t bring myself to put it on over her tights.

Paddling

After a little while the sandcastles lost their appeal and Lucia then wanted to go into the sea. The tears came again as I tried to explain that she couldn’t – then Daryn suggested taking off her tights and putting her in her crocs for a little paddle. In the end he carried her down and just let her feel the water on her feet. She laughed at how cold it was but I think she enjoyed the experience.

Then we had to take her off the beach to a seat by the grass, get her well dried off and get the tights back on before any sand got stuck to her. And more tears. We briefly considered letting her keep them off for a little while and just let her wear the crocs, but my fear of her cutting her feet or legs on a pebble or getting sand stuck in her toes and causing infection was too great. So on they went with a bit of a struggle. And then she said ‘I want to go home’.

Emotional

At the tender age of just two years old she already wanted to do what her brother and friends were doing. And she knew she couldn’t. And it upset her. Which upset us. If this is how she is already feeling what is it going to be like as she gets older? How will she cope? How will I cope? I’m feeling a little emotional just writing this and thinking about yesterday and the future.

I am usually very upbeat and positive but yesterday was a new experience for us all – and one that I found quite tough. I don’t want Lucia to feel different. I don’t want her to look different. I don’t want her getting upset because she feels left out. I want her to be happy, to be able to do anything she wants.

But sometimes – like yesterday – she can’t do things exactly the same. And I hope that we can manage to help her through these times as she gets older, help her remember that although there will be times when she will have to do things a little bit differently she is still completely perfect in her own way, that she can feel secure and confident in herself and always remember that she is loved so much.

Before we left the beach we once again took off the tights and ensured any rogue grains of sand were brushed out. We washed her feet and legs with bottled water, dried them off and settled her with a biscuit to coax her into letting us put them back on. And then we came home. And I felt like I could breathe again.

What I have to remember though is: nothing bad happened. She got through it ok. Until today, trips to the beach had been in the winter where we were all wrapped up in winter coats and shoes with no worries – but the beach on a sunny day is a different story and brings a lot of fear, worry and a little bit of sadness too.

This was really our first glimpse into potential difficulties summer may bring and a million thoughts are whizzing through my head now about our holiday to France. I know we will probably only spend a day or two on the beach when we are there but any advice on making the next trip slightly less stressful is very welcome!

Is there anything else I should have done or could do in the future? Was I being too cautious? How do others with Lymphoedema manage on the beach? Have any other parents got beach experience they would like to share? Would it be ok to take her tights off for a little while as long as she has shoes on? Though because her legs are affected too I can’t see that being a good idea due to the risk?

All in all the beach was new territory and we just need to learn how to deal with new situations like this and manage them with confidence so Lucia can also learn to manage them in the same way. And we will.

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More